Dear Friends,
The holidays are typically a food fest in our country – and can be a time of stress for our PWS families. With good planning, it is possible to make it a happy holiday for all.
- If you will be with relatives, carefully plan ahead of time and communicate the importance of food control with all involved. Make sure all attending know the “rules of engagement” and agree to cooperate. See that someone at all times is clearly in charge of your child with PWS. Clearly define when you are “changing guards”. As Dr Linda Gourash states, “When everyone is in charge – no one is in charge.”
- If your child is old enough, rehearse the “rules” before the special day and come to a mutual agreement on what your child will be allowed to eat. You can barter, i.e. “Do you want a little extra turkey and dressing, or do you want a piece of pie as your special treat?”
- It is okay to request that Grandma and other relatives tuck away tempting items during your visit and to discreetly check with you prior to offering your child a treat.
- Make sure you know what everyone is bringing, so there are no surprises on what the choices will be.
- Grandpa and Grandma, or aunt and uncle may want to bring a special gift toy to compensate for the food they have to deny your child.
- Go over with the hostess or your family the plan to contain accessibility to food. This will help prevent your child from sitting near bowls of food, rolls, or condiments. Many people do not consider how many calories children can consume with the extras – sugar, butter, ketchup, etc.
- After eating when people are just visiting make sure food is put away or, if left out, someone is responsible for guarding it.
Your child must have the security of knowing you will be strong in your commitment to keep them protected from food – in spite of themselves. Giving in, even once, means several battles ahead. Consistency is the key. Of course, each family must judge their own situation based on their child’s food drive and their own regulations on treats. Some families are raising their children to never have any sweets – no exceptions. Others (like ours) just go by calories and the weight of the child, trying to keep the diet less in quantity with more variation of food. Often, the most important thing is to prevent food sneaking or food demands. There is a large variance in the food drive of children with PWS. Some will ask or beg for more food, but make no significant attempts to sneak food. On the other hand, some will go to great extremes to get food, and are incredibly cleaver at doing so.
HOLIDAY ALERT FOR PRADER-WILLI SYNDROME
There have been several holiday seasons where some of our pre teens, teens and adults with Prader-Willi syndrome have had unexpected deaths due to food binging episodes that led to necrosis of the stomach wall and a perforation (tear) in the stomach. In several of the deaths, the person with PWS was slim, so there was no great concern about weight gain.
They were all in festive group situations, where “everyone was watching” which meant no one was watching. Keep in mind that even if a person with PWS is slim, it does not mean they have total food control. Add too many food temptations around, the lack of feeling full, and the high pain threshold, and you have the potential of filling the stomach dangerously full. Also add to the risk factors that in a study sponsored through PWSA (USA), a significant portion of people with PWS in the study had delayed stomach emptying, and in another recent study sponsored by PWSA (USA), virtually all in the study had an undetected swallowing problem which can lead to choking and/or aspiration.
We know that there are many food binging episodes of our children and adults with PWS – most not having such disastrous results, but we feel obliged to forewarn parents, grandparents, and caregivers of the potential risks. We want this to be a happy holiday season for all of our wonderful children and adults and their families.
Please help us keep them safe!
Sincerely,
Prader-Willi Syndrome Association (USA)
* There is a revised Medical Alert booklet available with new important G.I information. You can order the booklet by going to https://www.pwsausa.org/product/prader-willi-syndrome-medical-alerts/ and going to the online shop. A sample can be viewed in the “Medical” section on the website.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.